2024 年 41 巻 4 号 p. 684-688
Japanese Minisry of Health, Labour and Welfare published _“Th Practice guidelines for process of decision making regarding treatment in the end of life care” in 2018. In this guideline, the term “end of life” is not clearly defined. Neurodegenerative disorders, such as Parkinson disease (PD), show slowly progression and patients are gradually reach to death. On the premise, advance care planning (ACP) is needed befor making plans for end–stage treatment.
It is important to understand the concept of ACP, therefore preserved cognitive function of patients is desirable. We should know that cognitive function of PD is reported to be decline from early stage.
Prediction of prognosis and selection of therapies in advanced–stage is necessary and for making ACP. It is difficult to predict prognosis, because it is different from genotypes and phenotypes and clinical phenotype is often transformed during disease course. In addition, device–aided therapy (DAT) has potial to change prognosis. DBS, for example, is suggested to prolong prognosis of PD patients with DBS indication, however DBS has risk to exacerbate cognitive impairment of patients with GBA mutation. L–dopa continuous infusion therapy (LCIG and Vyalev®) is approved and clinical efficacy is reported, but not much about prognosis.
Prognosis is influence by life supporting treatments. Tracheostomy and gastrostomy have benn considered as life–prolonging treatment. Gastrostomy is esseintial for LCIG and LCIG is indicated for advanced–stage, but not for end–stage of PD. Moreover, it must be difficulto to make decision to receive or not to receive tracheostomy or gastrostomy at the end–stage of life.
We are engaging with ACP of PD in the specialized clinic. Informed consent of DAT, tracheostomy at pneumonia and gastrostomy at low–nutrition status is important factor of our ACP–PD clinic. We also recommend for family member to participate in ACP clinic, in case of cognitive insufficiency of PD patients.
